Hi
I've felt a mild cramp feeling in both calves for about 2 weeks. These are not sharp cramps like we all have sometimes (especially at night). It is very mild and sometimes lasts for 3 or 4 hours and then is gone.
It is not painfull but I feel that my calves are a little stiff. I've had no sharp cramps in calves since all this start (4 months now).

What you're describing sounds more like muscle pains. I get these very frequently in my calves and feet. The pain feels burning and cramping and lasts for hours or days at a time. I also get a stiff rubbery feeling in the calves. An actual cramp is when the muscle shortens and hardens. Muscle pains I believe are very common in bfs.

I've had the muscle pains on & off since September. Sometimes they're worse than the twitching. DON'T be alarmed if you get the occasional proper cramp - it does not meet you have als. I had one bad calf cramp in January but very little since. Remember, twitching with no weakness and a normal neuro exam = bfs, no matter how much twitching or muscle pain you get. A normal emg will give even more reassurance.

BTW have you seen a neuro yet or are you just going to tough it out (like Arron)?

Of course i've seen a neuro (even 4 of them All exams normal, and one clean EMG two months ago.
But I still worry that I might be in a very early phase of IT. It's funny that if someone else would tell me the story like mine I would convince him that he/she has no ALS for sure. But I cant believe that in MY case it's just BFS.

Funny, I'm exactly the same - when I read other people's stories I think "classic bfs". When I go back and read my own I think the same. But when the symptoms change or pop up in new places I start to worry again. I know it's not rational, but hey, who said humans are rational?

Pole, cramping was one of my last "new" symptoms, and began a couple years after my onset. I tried the suggested supplements to no avail. I did get major relief by hydrating consistently. I drink a gallon of water a day and the cramps have all but disappeared. Probably not the answer for everyone, but what is? Good luck.

Pole, I had both kinds, short cramps and long dull ones. Also had stifness - still do, I think. That or I'm just getting old. I've heard many BFS'ers say that after sitting cross legged or on their knees for awhile, it takes them longer now to loosen up. May be related, may be getting older!

I'm very new here and I'm sure you've been told this many times, but with 4 good neuro exams and a clean emg in the bank, you've surely taken yourself out of the running for "IT". You'll be watching your great grandkids play someday.

Welcome to the forum...
I was going to ask you, how long have you had BFS? You seem to have run the gamut of symptoms of BFS. Do you have any trouble with your joints? I do and was wondering if anyone else that has had BFS for a while does.

Grym,
I hope you're right. But the truth is that all my neuro exams and EMG were during first 2 months. Now, after next 2 months, cramping and a little stifness occured. Fasciculations are still the same. Still no weakness, but sometimes arms and legs fatigue.

I'm not sure if I would have next neuro exam now it also would be clean.

Hi Jenn and thanks. I'm over 5 years in now and yes, I would put myself at the high end of the symptom scale. At about the two year mark I was experiencing EVERYTHING. Things slowly improved and I felt much better at about 3 years. From years 2 -3 I had trouble even lasting a whole day without a nap. I was hurting badly, and had all the wierd symtpoms. I had to sleep, or try to, for about 2 hours every afternoon in my office.

Achy joints? Yes, I have them, but I can't say with any certainty that they're related to the syndrome. I've been involved in sports all of my life and that probably has more to do with my ahces than anything.

I was never officially given a BFS tag. My neuro, a top one, did mention the syndrome but never dx'd me with anything but ET. I haven't been to a neuro in about 2 years and only saw one about 4 times, excluding emg's.

Thanks for your reply. Sorry to hear you have been suffering for so long...I first developed BFS 5 years ago too, but mine has come and gone. I wonder if BFS isn't some sort of auto-immune disorder, albeit a mild one, with all of the symptoms it produces!
jen

I noticed my cramping/muscle pain after my twitching began. At first I just put up with it. Later on, I tried the supplement route. I used magnesium, calcium, B-12, multi-vitamins & bunch of other "miracle cures". In my case, they didn't help.

Last Feb I was trying to shed some pounds & started drinking more water. After about a month, the pains/cramping all but quit. I'm still pounding back the water every day & am relatively pain/cramp-free.

Pole, you hit a controversial topic. Being a 5 year + guy doesn't make me an expert, but I have done (probably too much) reasearch. Contrary to some of the stories you may hear, the legendary stories, it is rare for someone who has ALS to EVER have had a good neuro exam or a clean emg. Now, the exam and the emg may not have pointed immediately to ALS, but they were almost never normal. By the time someone who has ALS seeks examination or testing, the doc's almost always know there is something terribly wrong. The ALS diagnostic protocol is a firm one. Steps need to be taken before officially declaring ALS. But again, almost always, it's clear that SOMETHING is very wrong from the beginning. I know you've all heard the stories of the 9 year benign twicthers who develope ALS. The stories are sketchy, usally, and remember - coincidences happen. Having BFS doesn't mean you can't ever develop ALS. You have the same chances as the general public, which are very low. You're thrown back into the "normal" pool. A few people have hit the lottery or been hit by lightening more than once.